IMAGE DESCRIPTION: A burgundy background with an image of Carla who has severe ME in her bed with a circular image saying 'Story' The title: Severe ME Week 2023 7th -13th August. The ME Association logo (bottom right).

Severe ME Week 2023: Carla’s Story

Last year, my whole life is shattered as I developed very severe ME/CFS after COVID-19. For several months I lie in complete darkness, can barely lift my fingertips, unable to speak or listen to more than three sentences. There is nothing more that I wish for than freedom: being free of pain, grief and suffering, having freedom of movement. Most of all, I wish for independence and self-determination. Thankfully, my situation has improved through all ups and downs.

However, I am still severely affected though, in need of help in my everyday activities and housebound. But in one of the precious moments of “being able to read” (e. g. reading, processing, reflecting) I share with you this passage from the book The Prophet by Khalil Gibran:

From the chapter “Freedom”; for you can only be free when even the desire of seeking freedom becomes a harness to you, and when you cease to speak of freedom as a goal and a fulfillment. You shall be free indeed when your days are not without a care nor your nights without a want and a grief, but rather when these things girdle your life and yet you rise above them naked and unbound.

I still long for the freedom of being healthy (I guess it would be strange if I didn’t). If I however step back from this desire for one moment and pause, I see what surrounds me in the presence. Often that is not easy to bear: I notice all that I have lost, how disabled I am, and all grief and sorrow. Then I feel anything BUT free, rather I feel vulnerable, tied down and held back by this disease.

In other moments, in the midst of my vulnerability, I catch sight of the face of a loved one and hear their heart beating in our embrace. And during this moment, I let go of the desire of freedom…

By Carla with help from her sister and a dear friend.

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